WASHINGTON — Autism scientists and advocates met Thursday to develop an agenda for autism research, the first gathering of a group that hopes to command the attention of Congress and private organizations, in response to health secretary Robert F. Kennedy reshaping the federal autism advisory committee to support his agenda.
In January, Kennedy appointed 21 new members to the Interagency Autism Coordinating Committee, many of whom have tied the existence of autism to vaccinesdespite an overwhelming scientific consensus disproving that association. The refashioned federal committee has a “striking absence of scientific expertise,” said Craig Snyder, a consultant and former board member at Autism Speaks, a national advocacy group that also funds autism research.
The new group — confusingly called the Independent Autism Coordinating Committee — spent the day discussing their priorities for autism research, including genetic biomarkers, co-occurring diagnoses, and boosting studies into people with little-to-no speaking ability and higher support needs, sometimes called profound autism. Their inaugural meeting was slated for March 19 in an attempt to meet on the same day as the federal counterpart’s first public meeting, which was cancelled without explanation.
Though the Independent Autism Coordinating Committee lacks the statutory authority to direct which therapies or trials should receive federal funds, the current members are well-connected and wield significant influence in advocacy organizations and private organizations like the Simon’s Foundation. The research agenda they set could significantly impact the lives of autistic people and their families as diagnoses skyrocket, research funding balloons, and insurance companies clamp down on services.
The group seeks to counterbalance the federal committee’s role and steer autism research as Kennedy has ramped up his anti-vaccine rhetoric and called to “end” the neurodevelopmental disorder, started a $50 million autism research initiativeand health agencies have shuttered webpages that spelled out the risks of therapies that aren’t supported by evidence and often have dangerous side effects.
“What is at stake now, given the lack of such diverse representation amongst the federal members … is to divide rather than unite the autism community,” said Joshua Gordon, a member of the independent group. Gordon, a former director of the National Institute of Mental Health, was chair of the federal IACC for eight years between 2016 and 2024.
The group is the brainchild of Alison Singer, co-founder and president of the Autism Science Foundation. Singer, who has an autistic daughter, has become one of the public faces of the autism community in recent years as she has pushed the field to split the autism spectruma controversial idea that some researchers and autistic self-advocates disagree with. Even if her views are not shared by everyone in the autism community, Singer clearly has clout in her field, as many of the group’s members praised her for quickly organizing the meeting.
During her opening remarks, Singer said that autism research funding in the United States has grown from $419 million to $568 million in the last five years. The bump mostly stems from an increase from private organizations, which now make up 40% of total funding. Singer was basing her estimate on data from public announcements, since the federal IACC has not released updated numbers.
Many of the members of the new independent group had formerly served on the federal committee, which has been around for nearly two decades after the passage of the first Autism CARES Act in 2006 and coordinates roughly $2 billion in federal funding for autism research and training programs. Federal IACC meetings in the past were often tense, with scientists and advocates clashing over the right direction for research.
The Thursday meeting of the independent group lacked any such rancor. Multiple members noted the relative lack of tension compared to meetings of the federal body in the past. Both Snyder and Gordon referenced the fact that previous meetings of the federal body had brought together unlikely bedfellows, like Singer sitting next to Lyn Redwood, a nurse practitioner who aligns with Kennedy’s vaccine skepticism.
Some autistic self-advocates had the same critique when the independent committee was first announced, as all of the initial members are white and only one person is autistic. The federal committee has two autistic members.
“While we appreciate the necessity for alternatives to government-sanctioned bodies, we are disappointed to see so few autistic voices at the table,” said Elio McCabe, policy manager at the Autistic Women & Nonbinary Network, prior to the meeting. “We would hope that in times like these, the autism community could reach across divides and work together to preserve and brighten our future.”
The committee discussed adding new members who are autistic, with Helen Tager-Flusberg, acknowledging that “it’s a no-brainer.” Tager-Fulsberg is the director of the Center for Autism Research Excellence at Boston University.
The group also wants to create a report that would rival the federal committee’s annual report, though they did not decide on what its contents or if it would include impactful studies, like the federal committee typically does.
One of the few points of agreement? David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine, said it best:
“We do need to change our name I think.”
